hi there
i have recently been given the all clear from a brain tumor. It’s been a difficult 18mths of 2 brain ops 6weeks of radio and 1 year of chemo. I have 3 children ages 6,11 and 13 and my husband and I have done our utmost to keep things as normal as possible for them. I’m really struggling both mentally and physically at the moment. I don’t feel any relief that the treatment is over just utter exhaustion. My stock answer to all but my close friends over the last 18mths has been ‘I’m fine, thanks’ and I think trying to keep up the facade has worn me out. There has rarely been a day when food wasn’t on the table or laundry not done, but now I’m struggling. Not driving has been a nightmare and still remains my biggest frustration but I’m hoping that will change in the coming months. I want to celebrate/acknowledge what I have overcome but it feels strange as I’m already thinking about my next scan in Jan.
Can anyone relate?
Hi and welcome to the Online Community, although I am sorry to see you finding us.
So I can understand where you are coming from, my journey is rather different but being 4 years post treatment and yes, I still get asked the same questions and told I look great. On the whole I am but in those early days it was frustrating to get the same questions, but we were very honest with folks and told it as it was, if I was crap I would say so.....some folks could not take this but on the whole our true family and friends understood and did their best to support.
Talking with people who have been through treatment can help. We do have a Brain tumours group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
Why not make a cup of coffee and have a look at this great paper, folks will actually come back to me and say that they think that the paper had been written just about them. But what the paper does is bring you through the milestones in the post treatment journey.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Keep posting as it does help a lot.
Hi again, I thought I would put this on a second post.
What Is Scanxiety and How Can You Manage It?
February 26, 2018 - Choose Hope
The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.
Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.
Acknowledge your Feelings
Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.
Talk about It to the Right People
Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.
Practice Mindful Living
Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.
Distract Yourself
Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you guffaw. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.
Ask Questions
Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything –from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean– don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.
Plan for the Worst Outcome…
Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help you regain your power as well as your optimism.
…but Visualise the Best
Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.
((hugs))
I did not notice that your post was in the New to Community.
Here is a link to our Life after Cancer Group that buttercup01 has highlighted.
